Thursday, March 7, 2013

Gavin and I had a fascinating experience this morning! We met with a practitioner at Dr. Trish's office so she could do Computerized Regulation Thermography on Gavin. This non-invasive test was something we wanted to do in order to find out if Gavin was affected by mercury and heavy metals. We found that out and so much more. If you want to understand what this test is and what it can be used for - click HERE.

We settled into Dr. Trish's meditation room and there we met Judy Roberson who would be administering the test. We exchanged stories about our histories and found that we had a lot in common! It really is a small, small world - and people truly are placed in your path for a reason. I learn this lesson every day.

The test itself took about an hour and a half. Judy places an infrared probe at different points of the body to test temperature.

Gavin, as usual, was very sweet and compliant. First she tests the points with his clothes on. After that portion is over, we stripped him down to his diaper and he had to stand (pretty still) for six minutes. Don't you know - he did it!! I wasn't expecting that part to go well, but I guess I shouldn't have been surprised. Gavin has always been instinctively cooperative when we're doing something to try to help him.

I explained to Judy my hunch about a certain thing - that there's something going on in his mouth. Gavin has been banging his teeth for several years. He also had a long history of constant grinding, which has slowed down this year - thank God. And, he is very defensive around his mouth - especially on the left side. I just felt like something was up. His dentist has told me that his teeth look fine, but I'm skeptical. Sure enough - the test came back showing that Gavin has severe TMJ.

Here are the final results of the markers that came up following the CRT testing:

1.Food Intolerance, Sensitivity

2.Dysbiosis (Mycosis or Bacterial Infection)

3.Side Alert

4.Temporomandibular Joint, Vestibular or Neck

5.Brain Toxicity/Solvents/Pesticides/Metals

6.Thyroid (Hypo)

The food intolerance and Dysbiosis showed up as severe. I found this interesting explanation of Dysbiosis:

When your gut is dysbiotic, this means that the “bad germs” (disease causing bacteria, for instance) begin to edge out the “good germs.” When the bad germs edge out the good germs, basic biological functions (such as digestion) begin to breakdown, and symptoms (like diarrhea or constipation) begin to appear. Not all symptoms of gut dysbiosis are obvious. Because gut dysbiosis can lead to any number of physiological problems throughout the body, it can be responsible for symptoms as varied as depression and asthmatic wheezing.

When a body is unable to effectively combat the bad germs in the gut (or elsewhere in the body) a state of immune dysregulation can occur. Thus, immune dysregulation and gut dysbiosis often occur simultaneously, and each can occur as a result of the other. Additionally, gut dysbiosis and immune dysregulation can both lead to mitochondrial dysfunction, a condition where the body’s energy production is affected on a cellular level. Gut dysbiosis can therefore result in symptoms associated with mitochondrial dysfunction such as fatigue, low muscle tone, failure to thrive, motor delays and other complex health problems.

Perhaps this is why some of Gavin's labs showed possible red flags for mitochondrial disease! His geneticist doesn't believe that he does, indeed, have mitochondrial disease - but maybe this dysbiosis in his gut is mimicking mito. It's something to delve into. I am going to be adding digestive enzymes to his regimen - and maybe consulting a nutritionist for help with an elimination diet to see if that helps him. Judy explained to me that sometimes gut problems lead to teeth grinding. Maybe simple changes in his diet can relieve his TMJ issues.

The Brain toxicity/solvents/pesticides/metals showed up as moderate - which wasn't surprising. But the true test, which we haven't done yet, is through urine. Judy will instantly be able to tell me Gavin's mercury and heavy metal load through his urine. Collecting it from him will be my challenge over the next week. Wish me luck on that one. Hopefully I can get him to sit on a little potty seat long enough to catch it.

The Hypothyroid was a surprise to both of us. That's something that I'll have to get checked with a blood test at some point. We weren't sure what to make of that. The whole point of these tests, besides checking for mercury and heavy metal toxicity, is that it gives you a guide to bring to your own doctor. It can point out things before they become disease - which is amazing. I don't recall what the "side alert" means at the moment - I'll get back to you on that one.

I'm sad - but excited about the results. I don't mind the extra work that will come from these results - the dietary changes and all - but I just feel sad that Gavin has so much going on inside that we didn't know about. I hate to think the diet that I think is amazing might actually be hindering him. But I'm so excited that I found out about this testing and it gave me the information I need to start helping him now. I'm pumped for the possible changes and progress that may come from all of this!!

9 comments:

The first thing that comes to my mind with the food intolerance is lactose. And maybe the food intolerance is at least partially responsible for the dysbiosis. I know for me, dairy really messes with my stomach for a few days if I forget to take Lactaid. If Gavin's eating something regularly that his stomach can't digest then it's not surprising that his stomach would be a mess. The hypothyroid is surprising. One would think that, with all the testing Gavin has had, that they would have found that before now.

The CRT testing is cool stuff. Any idea how common it is? I'm definitely curious.

Hi Katy,Thanks for your comments. You would think that hypothyroidism would have showed up in all of Gavin's previous bloodwork. It's definitely something I'm going to look into. I have read that it's commonly missed unless you're specifically looking for it (which we never have) so I just don't know.As far as how common this testing is - I don't know that either. But I suspect it's not too common as it's hard to find on google! LOL! It's worth asking around or hunting online with your zip code. If you're in the Philadelphia area, email me and I can hook you up with a practitioner. I'm going to get tested soon, too!

Interesting results. I have heard of thermography, but I have never heard that it could be used for diagnostic purposes. It is certainly true that if a person has food intolerances or sensitivities it can throw their gut bacteria out of balance, but this can be improved with dietary changes. TMJ can be helped by diet too. I definitely think you should go with your instinct and seek the help of a nutrition professional. As a dietitian myself, I know that living with a highly restrictive diet is hard enough if you're following it yourself, let alone having to keep your child on it. And needless to say, the elimination diet process itself can be very tricky. It will be a tough road, but the end result will be worth it if it helps your little guy. Best of luck to you Kate!

Kate, I have celiac, and our two youngest boys have serious "gut" issues as well. We sought help from a nutritionist several years ago, and the progress we have made is astounding. It has been a journey, that I know is far from over, but the hard work has been SO worth it. I had a two year old that had not gained any weight in 18 months and had many other issues - and he is now a strong, healthy, growing five year old that is right on track. We use many supplements - especially digestive enzymes - and the nutritionist can help you with that too. I am very interested in this testing you had done. Our nutritionist wanted to test me for heavy metals, but because of the cost, we decided to wait. Please keep sharing about this if you are able - I know you are helping so many people! Thank you so much!

That's so great that you've seen so much progress! Was it hard to find a nutritionist? What did you look for when you were searching for one? And... if you don't mind me asking... is it an ongoing fee or was it a one time consultation and she told you what to buy and do?

I'm not sure where you live, but I highly recommend the woman who did our testing. The cost is $250 and it takes an hour and a half. She's also going to come to our house to test for EMFs!

Kate,I know Gavin is not sensitve to pain but TMJ can cause ear pain. It was really bad for me but then again I am super senstive in my ears.I have had wierd unexplained ear pain on and off for years. A recent complex MRI(which took 3 WEEKS for the insurance to finally aprove)showed that the postion of my jaw rubs against a nerve causes pain in my ear. Just something to remember as it took YEARS for doctors to figure it out. Turns out it was the TMJ the denetist called "no biggie" 10 years ago(when I was 5)The gluten free diet(as the person above your last reply said)can really help so many things. Has Gavin been tested for Celiac Disease? Have you? My mom's a celiac and she suffered from infertilty for years? my aunt also a celiac had real bad RA that got better w/ the GF diet. The test is a blood test. If it comes back postive then you get an biospy done.(I dont know how that would go for Gavin though)Just some thoughts.

Kate, We actually were not looking for a nutritionist when we found ours! We had called the company that runs the Allcat testing, which is blood tests to determine food sensitivities, asking questions about how we could get testing like this done for our two year old. They asked our zip code, and then told us about this nutritionist that was only 25 miles from our home. I read her web-site immediately and then called her and she spoke to me on the phone for over 30 minutes without an appointment! That started our journey with her. She charges per appointment, phone call, or e-mail. We saw her a lot those first couple of years, but now we do not see her often, but will if something new arises.

We live in Wisconsin - a little too far to be tested by the woman who did Gavin's! I am glad you are having EMF's looked into. I am VERY sensitive to WI-FI, so we do not have it in our home. It is amazing how lethargic it makes me feel, and how quickly I get a pulsing headache when I am in it. We also still have corded phones in our home too - not cordless - and I cannot handle holding a cell phone to my head. I find it ironic that all these wonderful technological conveniences can be affecting our health more than we realize. I am hoping you can share how that test goes!

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!